Long term effects of its use

Beyond Talking Points wrote: • CPAP users are a very informative group.

You might edit that to say "CPAP users at this site..." There are quite a few posts bemoaning the general lack of information of many xPAP users. If one lacks information to begin with, one cannot share that information.

About napping without cpap, I do that - with some boundaries. I don't lay down or even lean over on the arm of the couch, as the apneas will almost immediately wake me. However, if I sleep almost upright in a straight-backed recliner that keeps my posture good, and prop my chin so it won't drop, I can sleep comfortably for sometimes up to 4 hours. If my head falls backward or forward much at all, I will have events. But done properly, I have no qualms sleeping without it. I feel fortunate that whatever in my anatomy that causes my obstructions does not afflict EVERY position. The recliner is my backup plan for power outages.

Beyond Talking Points - In reading thru all the suggestions about delving into your personal case in great detail, it crosses my mind that some may find they would be BEST served by cpap, but are marginal enough that using a dental device temporarily for travel, vacation, and/or naps would not endanger them. Nothing wrong with a blend of treatments if it works for a person's specific case.

Eagerly watching this thread for when you do get your report.
Kathy

Check out this link (Beyond Talking, there is some mention of allergic rhinitis in relation to OSA)

http://www.docstoc.com/docs/532651/SLEE ... rome-icd-9

Um, did Beyond Talking just do to us what he does for work... fly in here, get his mission accomplished in no time flat, and fly out?

I'm a relatively new Board member, but, unlike other Boards, I have been awed by the spirit and competency of its contributors. To wit, I felt compelled to make a comment on this thread, which started out with these three questions:

1) Are there any unbiased, peer-reviewed studies of the long term use of the CPAP machine?
2) Are there any studies of persons that stop using it? For example, if I start and then stop after a year, will I return to slight apnea, or will I then have full apnea?
3) What happens to a person’s that has bee habituated to the machine and try to take a nap without it? Will he/she be able to nap?

The answers challenged the premises underlying all the questions and hopefully helped the questioner. My 20,000 ft comments address the faulty premise more than the answers:
1. Know what your condition is. You really dont.
2. CPAP is not a yes-or-no therapeutic device "sold" by big pharma and docs. It's a clumsy and awkward tool which requires a serious commitment on the part of the user.
3. The benefit and level of usage is determined by the user with constant bio-feedback (how you feel) and quantitative data (AHI events)
4. Your body doesn't know if you use a machine or not. It only knows if you've been deprived of oxygen or sleep and feels the cumulative negative effects. CPAP happens to be the best way to address these deficiencies at the moment.

Good luck with your turnarounds: An exciting and exhausting game. I used to do them.

Good luck with your investigation and possible therapy.

Gerry, great post! Thank you. I'm hoping the OP reads it although sadly I think we were probably just part of some research project that didn't give him the conclusion he wanted.

DoriC wrote:Gerry, great post! Thank you. I'm hoping the OP reads it although sadly I think we were probably just part of some research project that didn't give him the conclusion he wanted.

I'm not sure if it didn't yield the conclusion he wanted, but I also think we were part of a research project. I guess secret agents don't stick around.

I am still here, and reading the posts. I have not post as I am focused on getting my day finished early so that I can go to bead early. I am doing my own experiement to see if increasing the hours that I am available to sleep from 5.5 to 8 makes a difference. It is forcing me to be more focused and control my multitasking. Three days into it, I can feel some difference, but it is still too early to tell.

I did notice the research with regards to alergies and sleep disorders. It is 200 pages and I have not finished it yet. I the meantime I got a prescription strength alergy medicine that I will start taking over the weekend.

Researching the oximeter I found a SleepTraker watch that tracks my sleep patterns. Have anybody used it?

Things that I am focused on now:
1- Increase hours available to sleep (for the first time in my life)
2- Order the Oximeter (pending)
3- Start on alergy medicine

Thanks again for the post.

Hi Beyond, glad you're still with us. Getting 8hrs of restful, restorative sleep is always a good idea.

Beyond Talking Points wrote:I did notice the research with regards to alergies and sleep disorders. It is 200 pages and I have not finished it yet.

I hope you don't mean that ICD-9 document that I posted a link to. No one reads that! (Not even the people who wrote it, apparently, as I don't understand how UARS is not in there...) You could just go to the OSA section and read that page.

I the meantime I got a prescription strength alergy medicine that I will start taking over the weekend.

I don't know the nature of your allergies, but you may want to try a nasal steroid first, like Nasonex, and/or a spray antihistamine, such as Astepro. If you don't have luck with that, you could always go to pills like Claritin, Zyretc, and Allegra, and you probably want to avoid the older generation antihistamines like Benadryl, etc.

Has anyone come across research on the effects of Claritin, Zyretc, and Allegra on sleep architecture and things like PLMS? I understand they may be better than the older ones, but do they have no/minimal impact?

Do you snore? Have you ever tried things like Breathe Right Strips?

Seeing that the OP is still monitoring, I will try to tackle the original questions:

1. Are there any unbiased, peer-reviewed studies of the long term use of the CPAP machine?
2. Are there any studies of persons that stop using it? For example, if I start and then stop after a year, will I return to slight apnea, or will I then have full apnea?
3. What happens to a person’s that has been habituated to the machine and try to take a nap without it? Will he/she be able to nap?

Thoughts

First, it pleases me that you continue to monitor to learn. Too many people jump into a discussion with preconceived notions and only look for confirmation of those notions. Sticking around indicates you take the more open approach of searching for truth within the evidence.

Second, like all of us, you do come to this disucssion with a preconceived notion that intentionally or not, we convey the talking points of the manufacturers of CPAP units. Fact is that most sets of talking points fall apart once someone has to live with a product and/or therapy. The example provided earlier (and quite valid) is the iPad. Now that users have it, you are starting to hear about the shortcomings.

Well, CPAP has been in the hands of a lot of individuals for a fairly long time at this point. Many of those individuals did find the short comings. Many attempted alternative routes - surgery, dental appliances. The results both ancedotally as well as clinically show that CPAP does remain the "gold" standard. It works.

But it is NOT perfect. That's the lesson beyond that particular talking point. If someone could find a therapy that was easier to use and at least as effective, I would jump ship very quickly. But until that therapy has been proven, I won't jump onto a different therapy.

Along that line, surgery should be verbotten by insurance companies. The success rate (both as measured by medical professionals and by experieces of members here) is very poor. Often it does not solve the problem and can actually make it more difficult for CPAP to then be effective. Neither the cost nor the pain seem to be worth that potential outcome.

Dental appliances can and do help some individuals. From the reading I've done, it is not clear that anyone knows who it benefits and why it benefits them. But it is an option worth discussing with your doctors and dentists. Often that combined with CPAP can attain better results together than each can attain alone.

In the long run, I highly recommend educating yourself. Find out what your diagnosis was. Did you have a full polysomnograph (PSG)? (Or a sleep study as it's often called).

Think of this as no different than making a major purchase. You would normally do lots of research, learn as much as possible, ask the opinions of other owners of the product. Why doctors think we should just swallow their malarky hook, line and sinker is beyond me! I want to KNOW the purpose behind any major purchase / therapy / surgery / medical treatment.

Studies

Let's tackle this. There are long term use studies. Many only focus on compliance. And that's frankly an indication (beyond the talking point) that CPAP can be difficult to use. There are two clear reasons for this. First, it is difficult to use. Second, the current medical system does a lousy job of helping new users.

You can research more at:

http://scholar.google.com/scholar?q=long+term+use+cpap
http://scholar.google.com/scholar?&q=lo ... nefit+cpap

Clearly, these studies focus on the impact of CPAP on the individual, improvement of symptoms and compliance. The following is an example:

Long-term Use of CPAP Therapy for Sleep Apnea/Hypopnea Syndrome
http://171.66.122.149/cgi/reprint/159/4/1108

It concludes:

We conclude that long-term CPAP use is related to disease severity and subjective sleepiness and can be predicted within 3 mo.

Stop Using It
Nope. No studies like that. There are clear indications that obstructive sleep apnea adversely impacts health. To clinically study someone that did that could open a researcher to a charge of ethics violation.

Instead they flip the question on its head and try to find the long term impact of obstructive sleep apnea:

http://scholar.google.com/scholar?q=lon ... leep+apnea

Naps Without Using It
Apneas will resurface instantly. CPAP is not a cure. It only is a therapy to help you breathe almost normally during the night. But the underlying causes still remain.

Conclusion
I do offer the caution that just because we use CPAP therapy does not mean that we have "bought into the talking points". In fact, you will find incredibly honest views shared here. What we have found is what works for us. And we try to help others as they try to attain better sleep. There is nothing nefarious about that. In fact, it is a bit of an indictment of the medical community that they do not provide adequate support for their clients.

And in the long run, we all hope you are able to attain the best possible outcome and therapy to meet your needs.

JohnBFisher wrote:surgery should be verbotten by insurance companies. The success rate (both as measured by medical professionals and by experieces of members here) is very poor. Often it does not solve the problem and can actually make it more difficult for CPAP to then be effective. Neither the cost nor the pain seem to be worth that potential outcome.

John, are you thinking of a particular surgery when you say that? I would hesitate to say that the success rate of surgeries for apnea are very poor. First of all there are a couple of surgeries for sleep apnea that have extremely high success rates. That many would prefer not to have those surgeries does not negate their efficacy. Secondly, the picture that is starting to emerge from my reading is that there are indicators of likelihood of success or failure, and that previously these were not as well delineated. So even a surgery like a UPPP may have much higher success rate if the certain findings were considered in selecting a patient for it (Note that I am not saying that I would recommend a UPPP and I'm not saying how high the success rate would be, only that it wouldn't be as low as 40%). I think as assessment improves, surgery success rates will improve because the fit between patient and type of surgery will be better.

Thank you John. Very usefull. I like the way that you sumarized it.

Your post (and a clear head) let me to notice that I have not explained well why I am here and my use of the term talking points. Let me try to improve my previous explanation:

I have found that most web sites are focused on the talking points and that the Doctors have been trained on them. This is the reason why I bypassed them and ask the users directly. You all went through the decision that I have to go through in the next couple of months and there are no better persons than you to tell me the truth behind them.

That said, I did make one big miscalculation when I started my post. I came searching for facts for persons that have used it. I found that and much more. I also found a strong sence of community of persons that care for one another.

For that I am very greatfull.

I will keep monitoring your posts (I can do it from my phone) and will post as schedule allows.

Beyond Talking Points wrote:I came searching for facts for persons that have used it. I found that and much more. I also found a strong sence of community of persons that care for one another.

For that I am very greatfull.

Well said, Beyond Talking Points.

And I concur with your sentiments.

John,
Great job answering BTP. You displayed insight, wrote with clarity and showed patience beyond mine.